Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study.

Observed Findings

• Six major themes emerged from lived-experience expert recommendations: patient validation, provider attitudes and beliefs, empathetic communication, referral navigation, disability recognition and support, and self-care guidance
• Patient interview data showed positive feedback aligned with topics emphasized by lived-experience experts
• The ECHO learning model was adapted successfully to include lived-experience experts as educators
• Patients reported noticing differences in how their providers communicated and approached their care
• The LC&FIRP program operated continuously from January 2022 through March 2024 with sustained participant engagement

Inferred Conclusions

• Lived-experience experts can effectively influence primary care provider behavior and attitudes toward patients with ME/CFS and Long COVID
• Incorporating patient voices into medical education is a valuable strategy for improving healthcare quality in under-resourced areas
• The ECHO model combined with lived-experience expertise may serve as a scalable framework for training providers on poorly understood post-acute conditions
• Patient-centered education recommendations—focusing on validation, empathy, and disability support—resonate with actual patient needs and expectations

Remaining Questions